Sinamet for PSP patients?

[WindyGirl]

What experience has anyone had with Sinamet for a PSP patient. My husband’s neurologist prescribed it two years ago (also two years before his diagnosis). As the dosage gradually got larger, I began to see unusual things, so we weaned him off. Now, after his diagnosis, a different neurologist is prescribing it again. Curious to know if anyone else has had this prescribed and what the results were.

[honjen43]

It is a med prescribed for Parkinsons disease. It was given to my hubby for CBD but had no effect other than to make him nauseus so he didn't have it for long.Hugs

Jen xxx

[Caro2132]

We’re currently in the process of experimenting with the dosage. Mike was prescribed sinemet when he was originally diagnosed with PD in 2014, then rediagnosed with PSP in 2017. He was having 1 1/2 every 4 hours, but our new neurologist says to see if we notice any difference delaying the morning dose for a couple of hours, and the result is that it doesn’t change anything. So we have a follow up this evening and we’ll see what the doc says.

[Caro2132 in reply to Caro2132]

After the video visit with the neurologist we will taper off the sinemet over the next few weeks.

[AJK2001]

We felt that Sinemet helped Mum early on when she used to lurch across a room rather than walk, but found overtime it appeared to have no effect and we stopped it after about 5 years.

[LuisRodicioRodicio]

Hi WindyGirl!

Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. However if you didn't feel any difference then maybe it was not working for you.

Hug and luck.

Luis

[AnneandChris]

Hello thereYes, Sinamet was initially prescribed but once it was found that it wasn't doing anything it was discontinued.

Hope this helps.

Anne

[oilman1]

My wife went through the usual Carbidopa/Levadopa/Sinemet prescriptions but none of them worked for her PSP and were discontinued. From our experience, nothing has helped much in the last couple of years. She takes CBD twice a day but only to calm her nerves (not great but better than nothing). Not sure if this helps but PSP medication seems to be non-existent so far.

[daddyt]

I've been on Sinemet since my dx PSP-P in 2014. It has worked (not wonders) for me in that time, but now, not as well. My MDS said that many with PSP who went off Sinemet our having better results the second time around. Caveat - no two people will experience the same way, the response may vary.

Tim x

[Railfan]

I have tried it twice with 2 different Neurologists. The first, I had an initial benefit that improved my stiffness and balance for about 2 weeks. The Neurologist increased dosage several times, trying to recapture that early success. At one point in the increasing medication increase, I began to experience hallucinations. The hallucinations weren't threatening or scary to me and I waited to tell my Neurologist of the hallucinations for over a month. He removed that drug from me.

My Second Neurologist wanted to try it again at low dosage. I was on that 2nd round for just a bit over 4 months and ended it about 2 weeks ago with no benefit.

[Cuttercat]

Ask the doctor for the extended release. It helped my husband. It's not always good but depends on each person.

Hope that helps.

Cuttercat

[JBOVERT]

HI there yes I was prescribed in the beginning with Sinemet and u can say this about it I took alot of it on a Dailey basis and it did not do anything for me....so I stopped and since then I have been prescribed on two separate occasions about two yrs apart an I have not filled those perscriptions,

[Mariawatters]

I have been on sinemet for 5 years I have CBD . I haven’t declined too badly in that years although I hate medication so I tried to come off it to see would it make a difference, I didn’t want to be taking meds that had no affect . I’m on 37.5 mgs 5 times a day . I dropped the smaller tablet 12.5 mgs and felt dreadful but thought I would give it two weeks . In the end I went back on the full dosage and feel great ... but everyone is different. Hugs from Belfast x

[WindyGirl]

Thanks to everyone for your input. It is all so strange. First time around, my husband began having hallucinations once the dose was pretty high. But I never really saw any advantage, so we weaned him off. Then the doc who diagnosed him said that Parkinson’s meds often make PSP symptoms worse. But then the new movement specialist neurologist said to try the Sinamet again. I guess it’s all just a guessing game to see what works for which patient. Thanks again for sharing.

[Stephanielayell82]

Yes it's the only drug they can give to try to manage the symptoms. We found that different pharmacy use different fillers. The pharmacy that was a compound pharmacy worked the best. But not currently having her take it because of side effects.

[eaglet]

I have had no side-effects from using sinemet. I take 5 per day